I am new to the group, and had a hemorrhagic stroke on August 24th this year due to a mid-brain AVM in the tectal plate region of my brain. It was a terrifying experience while on vacation with my family, but I was discharged from the hospital within 5 days after 2 days in the ICU, 3 days in step-down ICU and with a recommendation to move forwards with "watchful waiting".
Since returning home from vacation I have seen neuro-surgeons in Seattle who recommended Gamma Knife surgery, and then the radio surgeon who would perform the Gamma Knife has recommended watchful waiting due to the damage that could occur to the surrounding brain tissue from the Gamma Knife procedure.
Now I am living with this in my brain and wanted to reach out to other survivors who may be in a similar situation to get more info on how you have made decisions about how to proceed with a surgery/treatment of living with your AVM and the potential re-bleed risk.
I would also be interested in hearing from others about their symptoms. I have vision issues due to a mid-brain syndrome diagnosis, and also have been experiencing some numbness in my extremities. Other symptoms have included tremors, tingling in my arms and legs, and through the base of my skull into my shoulders. The neurologist doesn't seem to think these are related to my AVM, but they have been appearing since this happened.
Hi LadyGray. There is a sub-group you may wish to join…http://www.avmsurvivors.org/group/radiosurgerypatientsgammaknifeother
The problem wih AVMs is that there is no easy way to get rid of them. Whatever you decide to do…we will support you in your decision.
As far as the other synpmtoms…sounds like your body is still healing from the stroke. My left leg shook for a long time after my stroke and I remember those tingling sensations. The brain heals very slowly but it can heal!
Thank you so much for your reply Barbara. Where was your AVM and how did you treat it? Also, how long did your symptoms stick around post stroke? I am now just over 8 weeks out. I'm glad to hear that these symptoms aren't a figment of my imagination. The doctors don't seem to want to attribute it to the AVM.
I am definitely going to check out the radiosurgery group as well. That was a helpful link.
hey there, I'm sorry to hear your prognosis. I was diagnosed with a brainstem AVM after it ruptured unknowingly in July 2011. I wasnt supposed to survive but i did. I suffer from vertigo thus use a walker to ambulate and my left side from the shoulder down has that :numbness/tingling" you refer to. My right side of my face also has a bell-paulsy, and though i had ocular surgery to bring my turned-in right eye out, another one ail be needed down the line. As far as memory goes i thought i was 16 when i awoke from aroma and had no recollection of my newborn so. Over time somethings came back stronger than others.. Not Everything came back (mentally/physically/emotionally) but overtime i was able to accomplish many things i thought to be lost causes.
like gamma knife the cyberknife is targeted radiation as opposed to radius nut aims to do the same thing. It doesn't hurt but i did get very sick the first of 2 days i underwent treatment. I havent had to many side effects yet im sure they will come in time but none the less im glad we went forward with this form of treatment and im some-what glad we did. I might not fair well down the line but the initial threat of another bleed (which would most likely end me)is one-step closer to not being a possibility. Im hoping in time there will be advancements to further better things but who knows. Long-story:short...? I think it was a good idea please let me know if theres any more info i can help elaborate/further describe
Best of luck and keep strong none of our journey are easy or make sense but at the end of the day they remain ours
Best of luck an God Bless
Scott D H
AD
Scott, thanks for your response. How long did you wait after your rupture to have cyber knife and what guided your decision in that? Also what side effects have you experienced following cyber knife? Lastly, what size is your AVM? Mine looks fairly small and I believe that is part of the reason that they are recommending watchful waiting. I have another angiogram scheduled in January so we can get a better view of my AVM once the hematoma is gone from the bleed. They may assess it differently then, not sure.
i had the cyberknife about a yr after my rupture--april 27-8 2012-my AVM is located at the base of the brainstem so it was impossible to embolize it to prevent further hemorrhaging, which would've been the first and most likely successful treatment. After meeting w/ a very regarded team they basically told me they were not equipped or comfortable enough to take any kind of surgical furthermost My whole family left that apt sobbing. After a few months of research into alternative methods of extraction/treatment we consult the dr who diagnosed me originally and he was determined to move forward but only dealt with embolizations he referred us to a close colleague of his that was well-versed in cyberknife and after a few in-depth consultation i was confident in his approach and knowledge of the study. Its a catch 22: 50% of drs will take abms more conservatively and believe the chances of rupture are very slim & would rather just leave them be (if it aint broke-dont fix it) while others are more aggressive & will to "roll the dice". Either approach is honestly f'n scary . My avm is literally no bigger then the head of a small pin but because of the location size is not the questionable factor. Honestly what pushed me to go forward was being so young and hopfully my body would react better to the treatments but who knows The initial idea was to do 2 treatments of cyberknife- then angiograms every six months to follow up on the slow obliteration (2 yr process) My local neuro doesnt find that many anagrams necessary so we agreed to one a year to see what we are/arent working with
as far as side effects : immediate: the first day i puked my brains out the second day i jus got tired and little nauseous everyone is different I've read about it having close to zero effects on people- i think it depends greatly on the local of where the radiation is being administered
I had undergone alot of recovery prior to the cyberknife afre having it done it set back my coordination a ways but I've found my way around things Long term is not certain yet but for now things are stable i think the choice to go forward with it or not should be the whole family deciding either way you go- its a tough road in one respect or another I just hope tis info finds you well and this site can become a beacon of knowledge for you and loved ones in t times to come its very smart to question and critique all avenues that come to your fruition when it comes to AVM
I hope this helps and if you have anymore questions i hope i can help yu out or point you in the right direction
Sorry for all the typos btw :)
Best Regards & God Bless
SDH